Month: July 2024

As part of the discussions around my treatment, I was given the option of diving straight into the fixing, or targeting managing my pain first. Given where I’ve been for the last year – and a couple of other considerations I won’t go in to here – I’ve opted for the stoma route first. For those not familiar with a stoma – you can read about it here. Sounds horrific doesn’t it? In reality, it isn’t. I’m fortunate (…weird choice of words that) to know somebody who has had one for most of their adult life, so I came into this fully educated.

Monday AM it was an early start into Kings at 06:30 to prep for Surgery. Booked into the ward, and down in prep by 08:30. Under around 09:00, back in recovery around 10:30. I took the advice of having happy conversations before going under the anaesthetic and it paid off – my conversation on the way back up were complimentary, and ridiculously friendly. Somebody now knows I think they have great hair.

Yet again Kings College have been exemplary. Their treatment and care has been beyond question, I simply couldn’t ask for more. I’ve been involved in every conversation – do I want an epidural as well as the normal anaesthetic? – and educated on those choices. Everything they’ve said has come through. I feel cared for. I feel like I matter, and I’m listened to. 

I’ve been up in the ward since Monday and the level of care I’ve received has continued. Managing the stoma is easier than I thought in reality. Takes a bit of practice but it’s nothing that I can’t manage. I was so looking forward to being able to shower though! Weird how your brain will potentially not let you feel clean for a while isn’t it?

I’m feeling positive, and together…and I’m no longer in pain – and that, my friends, is glorious. It’s the first time I’ve been this pain free since last summer. It’s weird to say but I was starting to forget what it’s like. I’m sore, sure, but that I can cope with – every day I’m stronger, and less sore.

What have I Learned?

Don’t give up on asking for help is probably my primary lesson. I hate to be negative about such things, however when I compare and contrast the treatment I’ve received at Kings compared to Royal London, the gap in care is astonishing. They couldn’t have been more different. I’m so pleased I found this place.

A positive frame of mind is hard to maintain when you’re in constant pain – but when you’re progressing, when you have a plan, and you’re surrounded by people who support you – every one of those moments gets easier.

I need to buy new clothes. None of them fit. I look like I should be out skateboarding or advertising my wares in prison.

I’m a lot more positive than I was even a few days ago. I am however fully aware of the journey in front of me; the difference is now I feel ready to face it.

Final Thoughts of Today

• My daughter is a bad ass, and I couldn’t be more proud of her, and how she’s coping.
• People have surprised me in their willingness to help – even when I’ve not asked, and not thought to ask…because I don’t know how to.
• I got this. 
• This one may be a bit dramatic – but when you feel you’ve lost everything, and you’ve settled on that outcome, oh my god do you feel free. Told you, dramatic, but it’s the best way I can word it.
• Forgive the Tolkien quote (or don’t – bite me): “I wish it need not have happened in my time,” said Frodo. “So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”. I could not agree with this more – always have had this mentality, if I think about it – it’s now just hitting home.
• Sometimes it’s the small gestures from people we barely know that can reaffirm your faith that collectively people are good people. Often, they don’t even realise they’re one of those people. I hope I am one of those people.
• Tummy trumps will never not be hysterical.
• By my calculations I am now approximately 0.9% donut. 

That’s something that’s uncomfortable to write down, and yet still not as uncomfortable as the experience itself. In internet vernacular – zero stars, would not recommend.

So here I am writing about this, throwing it out on to the Internet to be read, not read, lost in the noise. So why do it? Clarity, purpose, and perspective. I’ve written about perspective several times – for me, it’s something I often really struggle with, and yet it’s such an important life skill to have. Writing about things helps me with that perspective journey.

How many more colloquialisms can I get into this? Life is what happens to you while you’re busy making other plans etc.

So what’s this blog going to be about, and what’s it for? Well, I have kind of touched on the what it’s for above – it’s to help me through things. Writing for me is a mental tool. Secondly, I enjoy journaling, and after all, a blog is just a public journal. You never know, my experiences may just help somebody with their own perspective.

The one thing I’ll ask is please don’t feel sorry for me. I don’t need or want it (I’m not saying I don’t appreciate it….just it’s not what I need). This isn’t my first rodeo, I know what’s in front of me. 

How did we get here?

I have a history of stomach problems going back to the late 90s. In June-ish 2023, I started to experience pain in my lower abdomen. Not hugely life impacting at the time – think uncomfortable, rather than ‘painful’. I was also having problems with my knee/leg so I kind of put it all down to getting older, getting fatter, and not looking after myself. I decided to fix these things.

By August 2023 the pain was periodically substantial, so I attended A&E at Royal London Hospital. They filled me with antibiotics (a month’s worth!) and sent me on my way. They were convinced I had some bacterial infection and referred to prostatitis and chronic pelvic pain syndrome. This went on for several months – repeated visits to the GP, Royal London and then Guys. All the same outcome – sorry, not much we can do, have some naproxen. A huge simplification however between August 2023 – my first visit to A&E – and June 2024 that was the story. Along the way I was also having my leg sorted, albeit minor so perhaps not part of this story.

By mid-2024 I had been in a reasonable level of pain for a substantial amount of time. That shit adds up, and not only physically degrades you, it starts to mentally degrade you as well. I’ll be honest and say by early June I was mentally ruined. I couldn’t eat properly (been here before..), and I wasn’t able to sleep for more than a few hours at a time. I’d taken to sleeping on the sofa or jamming myself against a wall with my arm under the mattress – that way, I wouldn’t turn over while sleeping and hurt myself in the process.

August 2023 – 105Kg. 1 July 2024 – 65Kg. I’ve only once been this skinny, and that’s back I the day when guess what, stomach wasn’t working.

Along the way I’ve had about 4 months of antibiotic treatments. Even though I knew that was bullshit, I went along with it. This was ruinous for my stomach/eating and general wellbeing in reality, and it’s taken me a while to get over those antibiotics.

What Changed?

Well, two things happened. Somebody who I care and respect very much for took some control and made me get help after me practically having a mental breakdown through constant pain. In addition to that – I discovered Kings College Community Hospital. My experience with them could not have been more different.

I attended A&E feeling very sorry and down – I felt like I’d repeatedly asked for help, and was always being told to get it together, here’s some pain killers, get on with your life. My expectation at attending Kings was low. My expectations were wrong.

I attended. They had me CT scanned and admitted to a ward the same day. More importantly, I found somebody who listened to what I was saying, and actually seemed to understand it. That week in Lister Ward at Kings I had so many tests – MRI/CT, Colonoscopy, other things I can’t spell – I finally felt valued, listened to, and…well, like progress was happening. I was discharged on the Friday with reassurance that they got me. They did, they have. They’ve been in constant communication ever since.

Since that week in the ward I’ve had an additional MRI/PET etc. better pain management, a proper diagnosis and more importantly a PLAN. I have a plan, and that plan involves being surrounded by people who care, and who listen. I’m currently unclear on the important part of this Venn diagram of positive thinking.

What’s Next?

Today was about treatment planning – and I’ve been very involved in the conversation and the choices were very much mine. The Consultant even helped me produce an analysis of the choices so I had some clarity – there was a diagram and everything. 

I start radiotherapy & chemo-therapy next week (Early July). Potentially with surgery coming up too, subject to what happens. 

I’m OK with this. Like I say, plans help give me perspective, and once I have some perspective I can manage my day.

What Else?

This obviously has a decent life impact financially. I’m fortunate on that front – money isn’t a problem, and even so I’m insured so I’ve that to fall back on. I’m currently being scowled at for being uncomfortable at being able to claim for certain benefits. Entitled and deserving are not quite the same thing. I’ve sold my place – a place I loved – but you know what, once this shenanigan is over I can go back. There’s 4 blocks in that development and I’ve only lived in 3, so there’s room.

Work-wise I’m freelance anyway, and I’m well enough to do the stuff that interests me even if I’m perhaps not mobile enough to be able to do the stuff that doesn’t. WAIT. That made more sense in my head.

So I’m less worried about that side of my reality. 

My daughter is obviously feeling  bit beaten up by the whole thing. She’s finding things a bit scary – I get it. Nobody likes to see people they love in pain; I’ve experienced that watching her go through her recent operations. You’d take it for yourself in a heartbeat.

What will you see here?

Just my experiences as I work through this. You may/may not be interested, and that’s cool. This is mostly for me anyway! If you want to get in touch please do – Me@TheDayILostMyShiz.com. If I could ask however that you don’t share/tag this in an identifying way – I’m not sure I’m ready for that yet.

I got shit to do, so time to get to it. 

Final Thoughts (Of Today):

• Deserve ain’t got nothin’ to do with it (Unforgiven quote).

• Having a plan matters.

• Having people that care matters.

• Knowing how to ask for help is a life-skill I don’t have, and it matters.

• My friends are FAB.